Sleep: Your body will take it whether you like it or not

Discussion in 'Fibromyalgia Main Forum' started by nah.stacey, Feb 6, 2010.

  1. nah.stacey

    nah.stacey Member

    Sleep is ALWAYS an issue with CFIDS/FM sufferers.

    Generally my issue is that I can't get to sleep, stay asleep or sleep without crazy fever type dreams.
    My hubby is on a night shift that goes from 7:00 pm to 7:00 am. so he sleeps in the day. My children are all grown and gone and I am homebound for the better part of it all, so I sleep on his schedule. Somehow he is able to flip-flop on his days off to stay awake in the day and sleep at night. Obviously I can't do this as my sleep habits are already screwed up. So occasionally I pull a stupid and decide to stay awake all night and all the next day just to spend time with him.
    Well I pulled the all nighter yesterday and had a really great time with him. I was even able to be vertical until I finally couldn't take it anymore and crashed for four hours from 3:00 pm - 8:00 pm. Woke up, had a fun game night with my kids, they all came over to eat and play, mind you my husband petered out on us all by 9:00. We continued to play until midnight and then I stayed up and cleaned up the food, read, and finally couldn't take anymore and went to sleep at 2:30 am. Well here is the kicker, I thought I would just sleep for a few hours, like wake up around 10:00 am and be able to have another day in the world. NNNOOOOTTTT. I slept solid through from 2:30 am. until 8:00 pm the next day. That is 17 1/2 hours. I tried to wake up a few times but my body was just lifeless. I went potty in zombie mode, a drink of water in zombie mode and even changed from my bed to the luv sac, without becoming fully awake. It was an incredibly healing type sleep. I had only taken 18 mg of ambien initially at 2:00 am ( usual dose is 20 mg, that puts me out for 8 hours.).

    The most amazing sleep I have had in years, very deep, very healing. WOW.

    I really couldn't have woken up to a function mode if I had wanted or needed to. How on earth did I used to do it, and how do you others do it now?

    Your body will get the sleep it needs whether you want to or not, but why is it that you can't sleep when you want to and sleep when you want to be awake? Sheesh how messed up can a body get.

    What are your experiences with sleep? Am a just a weirdo or is this just part and parcel of this stupid DD?

  2. gb66

    gb66 Well-Known Member

    I am on the most riduculous schedule that I've ever been on in my life. I sleep from 8:30 a.m. till 7:30 p.m. I cannot sleep at night no matter how tired I am. I've tried staying awake all day and am still wide awake that night. I am exhausted and wired and in pain. If I don't sleep the next day, I still cannot sleep that night more than 2 hours. I don't understand it.

    A few years ago I decided I was going to try and turn my hours around. It took months of going to bed later and later and forcing myself to get up. I was in a daze all the time and could barely function but I kept on going so I could spend time with my family. Gradually, I got back to the same hours I had been sleeping, daytime hours. I finally just gave up and dedided that I had to sleep no matter what the hours are or I'd just fold up! It really is hard when I have to get up for medical appointments though. It's the middle of my night. I sure know what you're going through.

    It is also hard for my husband to live a normal life around me. He can seldom get any home repairs done and this drives him crazy. Wish I had a solution. GB66

    [This Message was Edited on 02/07/2010]
  3. Juloo

    Juloo Member

    It takes a lot of work to keep me on anything resembling a schedule when it comes to sleep. I do know that sometimes people with sleep problems will be under medical direction to be a bit sleep deprived on purpose so that the body will be more likely to go into deep sleep mode. Perhaps that's what happened with you. And deep sleep is what most of us really need (and don't get) to feel physically energized. I'm a bit in awe of your Ambien dose...I take just 2.5 mg at bedtime (half a 5 mg)...and that sometimes puts me out for 10 1/2 hours. Granted, it's not always deep sleep, but at least I can stay in bed without staring at the ceiling for hours on end.
  4. nah.stacey

    nah.stacey Member

    My ambien dose is pretty amazing. But you have to take into consideration a few things here;

    1) I have tried every sleep medication known to mankind and nothing works aside from ambien.
    2) My body metabolizes medication like it were candy. Consider your 2.5 to my 20. Its always been that way for me, from the time I was a little girl. It's inherited from my dad.
    3) I have been on ambien for 11 years. With intermittent breaks to try other things.
    4) I take ambien not only for sleep, but to keep the heart-wrenching Steve King/Stephen Spielberg dreams at bay. They rip my heart out.
    5) Sometimes it is the only way to escape the horrid pain of one of my routine viral attacks.

    About sleeping in the day.

    I have always been a night owl, so going to sleep in the wee morning hours is nothing new to me. Sleeping entire days away is new and gets rather frustrating when I need to talk to a doctor or actually go to an appointment. I usually stay awake all night or I will miss the appt.
    They are also scheduled in the middle of my "night". I sometimes wonder if it is because at night everything is quiet and the stimulation overload of the daytime hours is too much to bare. Think about it, no one will call, no one will come over, the sounds are quieter, and you are less likely to be bothered. I raised five children, and the wee hours were the only time I had to myself. HHHMMMMM.

    My husband told my of a lady who lived in a small town in China I think. She would stay up for two days and then sleep for two days. That would probably work for me if the pain weren't so intolerable about the 18th hour. That deep sleep was really amazing.

  5. Juloo

    Juloo Member

    I've heard it said that PWCs are all over the place when it comes to metabolizing meds or supplements -- and you and I are both examples of that, just at opposite ends of the spectrum. Meds stay in my system for so long that I end up having to cutting most all of my meds if they're the kind that make me 'foggy'. On the other hand, there are some that I've had to triple the dose for -- crazy, isn't it!

    And I definitely understand about deep sleep being amazing. The best sleep I've had was the anesthesia during an out-patient surgical procedure. I tried Xyrem for a while, and after a long titration, finally got a dosage and schedule that worked without making me sick. But it's just too expensive right now since I'm not working very much. I would so love for that to be covered by my insurance. If I could gather the discipline to be on it again, I would be pretty close to normal.

    I understand about intense dreams, as well. They're not usually nightmares, per se, but I have three or four a night, and I can usually remember them. In a lot of cases, they seep into the day after -- sort of a 'dream hangover' is what I call it. Sometimes I have what I think are adrenaline spikes, but they don't wake me up, they make me really angry in my dream. Unfortunately for my poor dear husband, who is a sweetie, sometimes in my dream I'm yelling at him, and I can feel all the adrenaline racing through my body. I hate waking up after that!
    [This Message was Edited on 02/07/2010]
  6. AuntTammie

    AuntTammie New Member

    currently this is what my sleep is like, though it seems to shift fairly often - usually getting later and later, but sometimes actually getting earlier.....inconsistent.........

    I don't know that I would say that it is my "MAJOR" symptom, but it is certainly a very big one, and it definitely disrupts my life a general, I just never get to sleep before 3, 4, 5 AM or even later, and then I sleep around 11 hrs (most days), (& I am not wide awake even then, & a lot of the time after I finally drag myself out of bed, I am only up for about 45 minutes before getting sleepy again & needing to nap for a couple more hrs), so trying to schedule anything during the day (like Drs appts) is really tough, when I first go to bed I can literally get up to use the bathroom every 10 minutes (for the first hr - no exaggeration).....then, after that I wake up every hour to hour and a half to go.....between that and the tons of very vivid dreams, there is no way that I am getting any deep sleep at all most nights (although since I have been taking LDN, I have noticed that occasionally I actually have one longer period of sleep some nights - still not nearly enough, but a bit better) ......that cycle goes on for weeks and then it's like my body finally lets me sleep and I can sleep as many as 36 hrs only waking up a few times, but then I wake up feeling really sick and disoriented, and then I also have a harder time getting to sleep the next nt

    and I have tried pretty much everything, too......I do occasionally still take Kava Kava or L-tryptophan, or even Benedryl or Flexeril, but they only help if I don't use them more than a night or two in a row, and even when they do help, I am still not getting refreshing sleep - they just seem to get me to fall asleep on the nights when I am tired but wired & know that I am not going to fall asleep at all without them

    ETA: that mention of sleeping 36 hrs is not an exaggeration....I have woken up a few times during such stretches to use the bathroom, but otherwise, when this happens, I am really out and no way could I actually get up and function.....this has now happened to me about 8 or 9 times in the last yr
    [This Message was Edited on 02/07/2010]
    [This Message was Edited on 02/07/2010]
  7. nah.stacey

    nah.stacey Member

    I thought my sleeping times were screwy, 36 HOURS?????

    That has GOT to be frustrating. I know my 17 hr stretch was hard to wake up from, you must have felt like you were in the twilight zone.

    First we can't get to sleep, then we can't wake up? Do many others of you have this problem???
    Also, what is up with the trauma nightmares, do you guys have these too??

    P.S. Notice this is posted at 2:00am???

  8. AuntTammie

    AuntTammie New Member

    yeah, it is definitely not a fun experience and twilight zone fits.....quite disorienting, to say the least.....and people still wonder why I can't work!?!!!?! (of course, that is VERY FAR from being the only reason, but it is certainly disruptive to maintaining any kind of normal schedule)

    oh and I always have bad dreams, every single time I sleep....very vivid, very strange, and very bad......I probably remember them so well, bc I wake up so frequently to use the bathroom most nights/days, & I am usually in the middle of one of those nightmares each time I wake
  9. AuntTammie

    AuntTammie New Member

    I totally know what you mean.....being alone, the first time I slept 36 hrs, I was so completely disoriented when I woke up, I had no idea what day it was.....had to go on the computer to find out, and even then the rest of the week I felt completely off - never really felt like I was sure of what day it was all week

    now that it has happened many times, I can usually figure out that day when I get up & the experience is not QUITE as much of a jolt, but it never ceases to feel very weird and scary
  10. AuntTammie

    AuntTammie New Member

    "Its just a horrible feeling, almost as though you had died but were the last to know. Lost in the Twilight Zone, brrrr. "


    and if you do manage to go out into the world shortly afterward, everything feel so surreal - usually I am not up to going anywhere for a few days after, at least, thoguh

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